oncoloblogy

Thursday, January 8, 2015

Not sure if anyone reads this blog anymore, but in case anyone is doing initial research and stumbles across it: Today is my 5 year anniversary. Or birthday, or cancer-versary, whatever you want to call it. Whatever, it's been five years since my MOAS and HIPEC. So far, so good. Scans have all been clear, markers in range.

Not much else you can ask for, right?

Things that have happened to me since January 8, 2010:

Met and married the most wonderful woman I can imagine.

Kids have grown by five years, into healthy, happy, fun teenagers.

Celebrated 5 Christmases with my family.

Became a college president (what?)

Working on sending my daughter off to college in the fall.

I make dinners for my family most every night, we do things like watch dumb TV shows together, take great family vacations to Florida, Mexico, Door County, House of the Rock, all sorts of fun, and we experience the joys and, yes, stresses and worries of growing up and old together.

All things that I might have missed. I hope to never forget how lucky I am.

Sunday, September 29, 2013

A few weeks ago I visited Dr. Fournier in Houston, at M.D. Anderson. Blood and scans were all clear. Not a hint of re-occurrence.

Not much else to report, but I'm posting this for those people that still find this blog when researching appendix cancer, so they know everything went well for me. I remember finding blogs or sites that just kind of tailed off... made me wonder and worry.

So, the big surgery was January 2010, and here I am in September 2013. I haven't forgotten the experience, but all is well.

Wednesday, February 27, 2013

It's been a while since I posted, but I don't have much to report! At least PMP-wise. I feel great. My health is fantastic, and I have minimal residual effects from my experience. Some left-over pain, scar tissue stuff. I get tired occasionally, most likely from ineffective digestion. I think. No way I'm going to complain about that!

Anyhow, there's been a big spike in hits on this blog in the past few weeks, so I thought I should post a positive update! Any questions, or any way I can help? Contact me through the comments or through my profile.

Sunday, September 9, 2012

I don't think many people read this blog anymore, and that's okay. I'm only keeping it alive for those people who are newly diagnosed (or their caregivers), for when they are desperately googling for help. I've tried to link to the standard, good resources.

Anyhow, I arrived in Houston this morning, tests tomorrow, results Tuesday morning. My MOAS was January 8, 2010. So 2.67 years ago, or so.

I haven't been down here in a year. It is a bit unnerving, I guess, to be back. Probably always will be. But it is also a moment to reflect, in a positive way. I have to remember that!

Tuesday, June 12, 2012

Well, the past several days have sucked. Rarely does a man of the cloth bring good news when he knocks on your door past bedtime. Troy W. Tousey.

I had the honor of being one of the speakers at his memorial service. Some random thoughts: Sheboygan, obviously being a good place to live, seems to be a good place to die, too. The number of friends and neighbors who swarmed Marci and the twins was unbelievable. They had the right mix of hugging, sympathy, etc. with digging in and getting shit done. Rev. Jim and Rev. Julia (UCC) were and are incredible. Troy and Marci's families, you guessed it, fantastic.

Terribly, terribly sad--but I think I left the service somehow feeling uplifted, and motivated. Weird, but what else can you do?

Damn. I'll miss this guy. Rev. Jim said it best: "He was the coolest guy we knew." More than a few beers were shared over deep conversations. Enjoy seeing the universe, buddy. We'll keep an eye on the kids, that's what the neighborhood is for, right?

Thursday, May 24, 2012

This blog is Google's number 1 link if you search for barium sulfate suspension banana.

I'm so proud.

Dan

PS: Also the number one hit for is the ukraine government hiding something about Chernoybl. WTF?
But for PMP doctor I'm ranked number 2 with Google Australia! Hello down there. Same for red balloon hallucination, ranked No. 2 in the US and UK. (Who searches for that, really?)

Sunday, January 8, 2012

Two years ago was my big surgery. I feel great. Last fall I was put on a once a year scan schedule for monitoring purposes, and my health is excellent--better than it has been in years, even before cancer.

A big thanks to everyone--my parents and siblings and the rest of my family and friends! There is no way I can every repay everyone for what they did for me.

Thursday, November 10, 2011

SHEBOYGAN, WIS. — In a lakefront town perhaps best known for its jaunty name and mouth-watering smoked bratwursts, there’s a new claim to fame: the most equal city in America.

According to the latest statistics from the U.S. Census Bureau, the city and suburbs of Sheboygan, Wis., have the smallest gap between the rich and poor of any metropolitan area in the United States.

While Occupy Wall Street protesters rail against the runaway wealth of the upper crust, here the top 5 percent take home a much smaller proportion of the region’s wealth (16 percent) than in the U.S. at large (22 percent). To talk hard numbers, the top 20 percent of Sheboygan County makes a median income of $127,440, while the general workforce makes around $50,000.

In fact, the city’s Gini score — a measure of income inequality on a scale from 0 to 100, with bigger wealth gaps measuring higher on the scale — is 39, lying closer to Canada’s figure (32) than that of the U.S. as a whole (47).

Residents say the city reminds them of how America used to be, when there was no such thing as a “middle-class crisis.”

“I guess I am not real surprised,” wrote Helene Capizzi of the Sheboygan Public Library in an email to The Daily. “Sheboygan reminds me a lot of what it was like to grow up in Milwaukee in the ’60s. We’re always a decade or two behind the trends, but I think that’s what we like!”

Indeed, visitors to this modest, quaint town might be excused for thinking they stepped out of a time machine from the Eisenhower or Kennedy years. Here, polka bands still draw crowds in the summer, parents safely let their kids roam unsupervised and busy manufacturers keep pumping out goods proudly “made in the USA.”

While employment in the relatively well-paying manufacturing sector has plummeted nationally, now accounting for less than 10 percent of jobs, in Sheboygan, one-third of workers hold jobs with manufacturing firms that produce everything from plastic wares to shower heads for luxury spas.

Kohler, the household name in plumbing products, is headquartered in its namesake city outside Sheboygan and is the area’s biggest private employer. Other local companies include Vollrath (maker of stainless steel cooking ware) and Bemis (toilet-seat manufacturer), which employ hundreds of workers each.

Partly as a result of the area’s still-healthy industrial base, the unemployment and poverty rates are lower than in America as a whole.

“It’s pretty much a middle-class town,” said Myron Rabinowitz, 62, who owned a steel company in Sheboygan for decades. “There’s not an abundance of wealth. Most people are middle-class workers.”

This egalitarianism is visibly on display at the Sheboygan Yacht Club — an institution that in other places might be synonymous with wealth, exclusivity, even snobbery. Here, on the stunning western shore of Lake Michigan, the roughly 400 members of the yacht club come from all economic backgrounds.

“It’s a working man’s club,” said Rolf Simonson, 68, the “commodore” (i.e., president) of the club. “You can’t just buy your way in. Everyone who joins has to put in their 50 hours. You get all walks of life: You get the factory guy at Kohler, you get the president of some company. … When you’re working in the boatyard, you’re the same as everyone else.”

Simonson, a retired pediatrician, lives in the town of Kohler, which is seen as the relatively more affluent suburb of Sheboygan. Though a few luxury homes can cost a half-million dollars or more, an attractive house in Kohler can be had for $200,000 or less, according to current listings. (Many homes in Sheboygan proper cost roughly half that.)

Because of this lack of real-estate extremes, some residents struggled even to identify the bad parts of town. “We don’t have good and bad neighborhoods,” said Simonson. “You might find a bad house next to a nice one.”

The city retains vibrant local traditions, such as Friday Night Fish Frys at nearby taverns, and “Brat Days,” a festival held since 1953 in celebration of sausages. “People here really like tradition,” said Capizzi. “I think we are very community-minded. I always call it a big, small town.”

Like the small towns of yesteryear, Sheboygan also prides itself on being exceptionally free of violent crime. In 2009, the city was ranked as the second-safest in America out of 332 metropolitan areas. Outsiders covet the city’s relative safety. Jason Bull, 39, the principal of Sheboygan’s North High School, said he moved to the area from Milwaukee partly because he and his wife “wanted our kids to run loose and not have so many concerns.”

The public school system also remains a point of pride. With 10,000 students, the Sheboygan Area School District exceeded state averages in test scores for 10th-graders in multiple categories, including math.

“What makes the school good is that parents are invested, they care,” Bull said. “The saying ‘It takes a community to raise a child’ is embraced in Sheboygan more than in other places.”

Simonson boasted that the public schools were good enough so that “here, rich people don’t send their kids to some academy somewhere.”

The spirit of engagement extends to volunteering. Marilyn Montemayor, 70, has served as an alderman, a library board member and a teacher of French cooking at the art museum. Mary Eckardt, 61, a lifelong resident, said she volunteered at a women’s shelter and a retirement home.

Not that the town is without problems. In the late 1990s, Bull estimated, the percentage of students on free or reduced lunches was in the “high teens, low 20s.” Now, Bull said that figure was 37 percent.

“We have seen an increase in transient-type families coming to the school,” he said. “The economy, the world, America, it all affects Sheboygan.”

Signs of economic distress are also apparent at the public library, a bustling three-story building downtown. One display covers the theme, “Thrifty Living,” and showcases books such as “Two Incomes and Still Broke?” and “Save Now or Die Trying.”

And the beer-loving city has lately been in the grip of a booze-fueled political scandal. Mayor Bob Ryan, an alcoholic who has lapsed repeatedly, faces a possible recall election after going on a three-day bender this summer that ended in a bar fight. Citizens have gathered more than 4,000 signatures in support of recalling Ryan, despite widespread sympathy for his vice. “You’d be surprised how many people think it’s no big deal because everyone gets drunk,” said Capizzi.

But even as Sheboygan faces uncertain times, locals are proud that their fortunes generally rise and fall in tandem. Montemayor noted that while the economy was tough, “most people have taken the ride down together.”

This is perhaps one reason why inequality has come to the fore: Many Occupy Wall Street protesters wish the country could return to more egalitarian times — not only in terms of economics, but also in terms of political influence.

Katherine Curtis, a sociologist at the University of Wisconsin-Madison, told The Daily that “when we see a community with less inequality, what that means is that there’s less likelihood of polarization. We might have differing views, but the distribution of power is not so extreme.”

That seems to be how the residents of Sheboygan like it.

“We may not fly with the eagles at the best of times,” Simonson mused, gazing out at the harbor, “but we don’t go down when times are bad.”

Wednesday, October 12, 2011

Monday, September 19, 2011

I returned from Houston last week, from my latest check-up. No evidence of disease (NED is my friend!) and tumor markers are all well below safe levels. My doctor is considering letting me go a full year without a scan, rather than 4 or 6 months. Which would be great, given the levels of radiation emitted by CT machines. So, now I can push this out of my mind for a while.... After a few more words, right?

Ivanna, Caroline (Randy's spouse), Randy, Val, and me.

I'll refer you to this post by Ivanna (click HERE) for details on the trip and an impromptu gathering of friends in Houston, an event she named "Appendilooza." Ivanna is a real writer--very thoughtful, and she managed to capture in writing the essence of two quick days we spent together. I don't think I could have explained all the feelings the way she did. I hereby adopt her post as my own.

It felt right to meet these people face-to-face. Randy and his lovely wife Caroline (Houston) are new friends, but I've known Ivanna (Austin) and Val (Kansas City) for a while, and it seems like we are old friends.

I've met a number of people with appendix cancer and/or their caregivers, in addition to these friends, and we follow our respective ups and downs closely. It can get quite emotional. It seems like a month does not go by without someone passing away. Maybe I did not know them well, but it is sad all the same. But, on the other hand, we all celebrate the annual check-up and "all clear" results, and I love to hear the stories of people years out from the surgery, living healthy lives.

So, what would a trip be without some random pictures?

And how could a guy like me NOT pull over when the sign says TEXAS PRISON MUSEUM. This is "Old Sparky":

Below is only part (!!) of my cousin John's Star Wars collection. John lives near Fort Worth with his lovely wife Tammy (an awesome cook!) and his 10 year old son Joseph--who paid me the ultimate compliment, saying I looked like either Han Solo or Indiana Jones.

I spent a night in Dallas at the house of my Uncle Terry and Aunt Nancy, who have been big supporters over the past few years. I am eternally indebted to them for their constant "checking in" on me when I was ill.

And if you've been following my blog, you know that wherever I am, I like to eat like the locals...this was just off the interstate, somewhere between Dallas and Houston.

chopped BBQ beef,
beans, and a sweet tea

Change of topic, kind of: I'm a big fan of Roger Ebert. I read his movie reviews and his blog, and follow him on Twitter. Ebert is a cancer survivor too, and he has written very eloquently about the experience, and also wrote an incredible essay about being alone which I bookmarked and still occasionally read.

One of his recent blog entries really grabbed me: "Films that are not for the dying so much..." In it he comments on two recent films about falling in love when you have cancer. I had not heard of one of the films, but the other, titled "50/50," is getting a lot of buzz. I think I'll try to see it, I'm not sure. Watching shows or movies about cancer can be kind of tough (I am going to a funeral for a co-worker/friend tomorrow, and he died of cancer; we were going through our respective treatments at the same time--I don't know how I'll react). But I do like Seth Rogan.

Anyhow, please read that essay by Ebert. In particular I enjoy that he mentions how the patients in these two films "have a great deal of time do so romantic things and occupy touching spaces and talk as if they had more time." He contrasts that movie world with the reality of what cancer patients and their loved ones actually go through, including a very touching tribute to his caregiver/wife....

Here's the trailer for one of those movies. (Joseph Gordon-Levitt's character's attractive, female therapist is like, what, 19 years old?)

Okay, time to go back to living my life.... I don't want this experience to outwardly define me. I know it is a part of me and always will be, and I'm strangely thankful for that, but there's more to life than just this.

Saturday, August 13, 2011

The media sucks. They make this seem like some scam by inflating some controversy until it looks like it is as big of a deal as the successes of the procedure--which are incontrovertible when it comes to appendix cancer. The reader comments are interesting, go to the website to read them (good comment by my bud Randy!). Lots of long term survivors chime in. Also a lot of crackpots. Sure, it may not work for every form of cancer, but why then dismiss it? Sometimes I lose faith in my fellow citizens.

Bottom line--the procedure saved my life. (The article did kind of creep me out, it reminded me of what an invasive surgery this was...)

August 11, 2011

Hot Chemotherapy Bath: Patients See Hope, Critics Hold Doubts

SAN DIEGO — This is cancer therapy at its most aggressive, a treatment patients liken to being filleted, disemboweled and then bathed in hot poison.

The therapy, which couples extensive abdominal surgery with blasts of heated chemotherapy to the abdominal cavity and its organs, was once a niche procedure used mainly against rare cancers of the appendix. Most academic medical centers shunned it.

More recently, as competition for patients and treatments intensifies, an increasing number of the nation’s leading medical centers has been offering the costly — and controversial — therapy to patients with the more common colorectal or ovarian cancers. And some hospitals are even publicizing the treatment as a hot “chemo bath.”

To critics, the therapy is merely the latest example of one that catches on with little evidence that it really works. “We’re practicing this technique that has almost no basis in science,” said Dr. David P. Ryan, clinical director of the Massachusetts General Hospital Cancer Center.

But to some patients, the procedure, however grueling and invasive, represents their best hope for survival: “It’s throwing everything but the kitchen sink at cancer,” said Gloria Borges, a 29-year-old Los Angeles lawyer who had her colon cancer treated with what she called the “pick it out, pour it in” procedure.

For hours on a recent morning at the University of California, San Diego, Dr. Andrew Lowy painstakingly performed the therapy on a patient.

After slicing the man’s belly wide open, he thrust his gloved hands deep inside, and examined various organs, looking for tumors. He then lifted the small intestine out of the body to sift it through his fingers.

As he found tumors, he snipped them out. “You can see how this is coming off like wallpaper,” Dr. Lowy said as he stripped out part of the lining of the man’s abdominal cavity.

After about two hours of poking and cutting, Dr. Lowy began the so-called shake and bake. The machine pumped heated chemotherapy directly into the abdominal cavity for 90 minutes while nurses gently jiggled the man’s bloated belly to disperse the drug to every nook and cranny.

The treatment is formally called cytoreductive surgery followed by hyperthermic intraperitoneal chemotherapy, or Hipec.

Recent converts include University Hospitals Case Medical Center in Cleveland, Montefiore Medical Center in the Bronx, and even Massachusetts General. The Memorial Sloan-Kettering Cancer Center is looking at it, according to people in the field. Advocates predict that the number of procedures could grow to 10,000 a year from about 1,500 now.

The therapy has even been featured on an episode of the TV series “Grey’s Anatomy.”

But Dr. Ryan, a gastrointestinal oncologist, suggested in an interview that the procedure was being extended to colorectal cancer because “you can’t make a living doing this procedure in appendix cancer patients.”

He debated the procedure publicly at the recent annual meeting of the American Society of Clinical Oncology. While some patients did seem to live much longer than expected, he said that they had been carefully selected and might have fared well even without the therapy.

Proponents say that if cancer has spread into the abdominal cavity but not elsewhere, then lives can be prolonged by removing all the visible tumor and killing what’s missed with Hipec.

By contrast, said Dr. Paul Sugarbaker, a surgeon at Washington Hospital Center and the leading proponent of Hipec, “there are no long-term survivors with systemic chemotherapy — zero.”

Dr. Sugarbaker, who opposed Dr. Ryan in the debate, said that it has long been known that cancerous cells are unable to withstand as much heat as healthy cells. And putting the chemotherapy on top of tumors should be more effective than systematically delivering it through the bloodstream.

One randomized trial done more than a decade ago involving 105 patients in the Netherlands did show a striking benefit. The median survival of those getting surgery and Hipec, plus intravenous chemotherapy, was 22.3 months, almost double the 12.6 months for those getting only the intravenous chemotherapy. But 8 percent who got the surgery and Hipec died from the treatment itself. And critics say that since that trial was conducted, new drugs have come to market that allow patients with metastatic colorectal cancer to live two years with intravenous chemotherapy alone.

A new trial in the United States has been temporarily suspended so that researchers can find a way to recruit patients. After nearly a year only one patient had enrolled, because people were reluctant to chance winding up in the control group, according to one of the investigators.

While proponents contend that the risk of dying from the surgery has been reduced since the Dutch trial, the procedure still lasts eight hours or more and full recovery can take three to six months. “It’s maximally invasive,” said Dr. Sugarbaker, who often removes the “spare parts” — organs a patient can live without, like the spleen, the gall bladder, the ovaries and the uterus.

The cost of the surgery and Hipec, including hospitalization, ranges from $20,000 to more than $100,000, doctors said. While Medicare and insurers generally pay for the operation, the heated treatment may not be covered. But doctors added it may be if it is described merely as chemotherapy. Some patients, like Ms. Borges, who is a fitness devotee, recover well and say the procedure staved off a death sentence.

But Dr. Alan Venook, a colon cancer specialist at the University of California, San Francisco, said that a couple of patients referred by him had “died miserable deaths. One lost much of her abdominal wall to infection and just died in misery.”

Another risk is that the surgery may be done unnecessarily. CT scans cannot pick up many of the small tumors, so it is often unclear how much cancer is inside until the patient is opened.

In June, Dr. Lowy sliced open a woman and saw, to his horror, that she had more tumors than he could remove. Taking out only some would not improve her chances of survival, so he closed the incision, and she is now starting intravenous chemotherapy.

Things with the male patient, Andy S., went better. A 41-year-old father of two from near San Francisco, Mr. S. agreed to let a reporter observe the surgery, but asked that his full name not be published because he did not want his cancer history to surface through Web searches.

Mr. S. had abdominal pain eventually diagnosed as appendicitis. But the appendix was found to be cancerous. Such cancers typically spew mucus containing tumor cells into the abdominal cavity. So he signed up for surgery and Hipec with Dr. Lowy.

“I’ve had to say my goodbyes to everybody,” Mr. S. said the day before the operation. “I had to talk to my priest. I had to do all these things I never thought I’d have to do at 41. I wouldn’t wish it on my worst enemy, but I have to go through with it.”

Dr. Lowy explored the entire cavity from the diaphragm to the pelvis. He found mucus in several spots that he sopped up with a cloth and also tiny tumors the size of a pencil eraser that had implanted in several spots. He snipped those out and sewed up the wounds. He removed the right side of the man’s colon and the omentum, a fatty structure.

Then two Y-shaped tubes hooked to the Hipec machine were inserted into the abdominal cavity, one to deliver the chemotherapy and the other to bring the drug back to the machine to be reheated. The incision was sewn up around the tubes so the chemotherapy would not leak.

The man’s belly was filled with three liters of saline fluid and the chemotherapy, a generic drug called mitomycin C, heated to 42 degrees Celsius, or nearly 108 degrees Fahrenheit. Any hotter could have caused injuries. Bloated with liquid, the man’s torso resembled a water bed.

After 90 minutes, the fluid was drained and the incision reopened for a final check before the patient was stitched up. The procedure took six hours.

“We got all of the visible disease, and he didn’t have a lot of visible disease,” Dr. Lowy said with satisfaction.

Mr. S. left the hospital eight days later, happy to have undergone the treatment. “I want to have the best chance I can have to never see this again,” he said.